July is Disability Pride Month. Now, don’t flame me right away for writing this, but I don’t think we need a month highlighting disability pride — just like I don’t think people with MS need a month in October spotlighting rare diseases. MS is invisible but, with more than 2.3 million people carrying that diagnosis, it’s not rare.
Disability Pride Month seems to have started as Disability Pride Day, which was highlighted by a parade in Boston in 1990 celebrating the passage of the Americans with Disabilities Act. The parade has been an on-and-off thing in several cities since then. Disability pride appears to have switched to a capitalized month in 2015, when the mayor of New York City declared it to be so.
My colleague and friend Kevin Schaefer, who has spinal muscular atrophy, has written about Disability Pride Month at the SMA News Today Forums. Kevin writes, “This is a time to celebrate people with disabilities, and to advocate for a more inclusive world.”
I love ya, Kevin, but I don’t want my disability celebrated, and being diagnosed with MS certainly doesn’t give me any pride. I’m proud of my kids and my grandkids. I’m proud of the 2019 World Series champion Washington Nationals, and (usually) of the work that I do. People might be “Boston Proud,” but I’m not “MS Proud.”
Disabled World says, “Disability Pride has been defined as accepting and honoring each person’s uniqueness,” but it doesn’t say who defined it that way. The Merriam-Webster Dictionary defines “pride” as “inordinate self-esteem” and discusses it as being a “state of excessive self-esteem.”
Can’t we find a word better than “pride” to describe how we feel about living with a disability? Do we need a day, week, or month to advocate for a more inclusive world? Shouldn’t we all be doing something every day to try to accomplish that?
Here’s another word that I’d like to see stricken from the disability lexicon: “fight.” I don’t “fight” with my MS. We may arm-wrestle once in a while, but it’s never a fight.
I never want to be described as “battling” my MS and someday, far in the future I hope, I definitely don’t want to be remembered as having “lost his battle with multiple sclerosis.” I live with my MS. The way I live with MS is something that I’m proud of.
(A version of this post first appeared as my column on the MS News Today website).
(Featured image by GraphicMama-team from Pixabay).
